Living well and Loving Well - FSHD Society

Living well and Loving Well

Ora Prilleltenskyora@miami.edu

Isaac Prilleltenskyisaac@miami.edu

www.thelaughingguide.comwww.funforwellness.com

Questions

• What is a healthy relationship?

• What does it look like?

Healthy relationship:Affection

• Spending quality time together

• Caring for one another

• Empathizing and feeling understood

• Expressing appreciation and affection

• Celebrating each other’s strengths and accomplishments

Healthy relationship:Communication

• Expressing needs and wishes

• Shared decision making – voice and choice

• Managing stress and crisis

• Resolving conflict

• Good balance between separateness and togetherness

Question

• What does it take to make a relationship healthy?

Happy relationships require

• Making time for the relationship• Finding ways of having fun together• Showing affection and providing support (5-1

ratio)• Ensuring that everyone’s needs are met• Sharing how you feel and expressing your needs• Being a good listener• Being willing to deal with differences• Expressing concerns and grievances in a

constructive manner

Your Turn

• All families have challenges. Based on your experience, what are some challenges for families with FSHD?

• How do you foster healthy relationships in families with FSHD?

Challenges in families with FSHD

• Impact of disease progression on individuals with FSHD

• Implications for other family members

• Managing negative emotions

• Balancing needs and resources

• Confronting barriers in the physical and social environment

• Confronting internal barriers

• How do you foster healthy relationships in families with FSHD?

Foster healthy relationships

• Cope with FSHD as a family unit

• Acknowledge FSHD but not be defined by it

• Adapt to the progression of the disease

• Address issues of interdependence and need for assistance

• Affirm the importance of meeting everyone’s needs

• Attend to reciprocity and mutual care

Gifts you can give and receive

• Gifts of the hand

• Gifts of the heart

• Gifts of the head

Foster healthy relationships

• Communicate openly and honestly

• Acknowledge difficulties, challenges and losses

• Build resilience and find meaning

• Create a narrative of family strengths

• Cultivate common interests and shared activities

• Seek resources and extending the circle of care

Well-Being

Experiences of pleasure and purpose, over time, in “i coppe” domains of

life

Domains of Well-Being

• INTEPERSONAL

• COMMUNITY

• OCCUPATIONAL

• PHYSICAL

• PSYCHOLOGICAL

• ECONOMIC

Well-BeingPLEASURE

•Joy

•Humor

PURPOSE•Mattering–feeling valued–adding value

Domains of Well-Being

• INTEPERSONAL

• COMMUNITY

• OCCUPATIONAL

• PHYSICAL

• PSYCHOLOGICAL

• ECONOMIC

BET I CAN: Seven scientific principles to promote well-being

Well

Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next Steps

copyright (c) 2012 Prilleltensky. Do not reproduce or circulate without permission

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BET I CAN STRATEGIES

Well-Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next Steps

SET A GOALCREATE POSITIVE HABITS

BET I CAN

Well-Being

Behaviors

Emotions

Thoughts

Interpersonal Context

Awareness

Next Steps

MANAGE NEGATIVE EMOTIONS

COLLECT POSITIVE EMOTIONS

BET I CAN

Well-Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next Steps CHALLENGE

ASSUMPTIONSWRITE A NEW STORY

BET I CAN

Well-Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next Steps

CONNECTCOMMUNICATE

BET I CAN

Well-Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next Steps

READ THE CUESCHANGE THE

CUES

BET I CAN

Well-Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next Steps

KNOW YOURSELFKNOW THE

ISSUE

BET I CAN

Well-Being

Behaviors

Emotions

Thoughts

InteractionsContext

Awareness

Next StepsMAKE A PLAN

MAKE IT STICK

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Videos

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Physical

PhysicalInterpersonal

Interpersonal

Psychological

Psychological

OccupationalEconomic Community

Mini-Games Teach Wellness

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Interactions: Connect and Communicate

• Meaningful relationships and social support are critical to our health and happiness.

– Make time and share your inner life

– Express appreciation and affection (the 5 to 1 ratio)

– Manage Conflict

– Focus on strengths

– Take delight in loved ones’ successes

Communicate with L.O.V.E.

• Listening

• Observing

• Verbalizing

• Empathizing

Listen Well

• Give the gift of listening

• Demonstrate your intent to listen

• Remove barriers to listening

• Use following skills

• Confirm your understanding

Observe Well

• Facial expressions

• Body language

• Tone of voice

• Read between the lines

• Congruency between verbal and nonverbal communication

Verbalize Well

• Be assertive

• Say what you mean

• Avoid double messages

• Make your message clear

• Own your message

Empathize Well

• Place yourself in the other person’s shoes

• See things from their perspective

• Feel what they are feeling

• Demonstrate empathy

How can you use BET I CAN?

• What skills can you use in your situation?

• Select one and apply it to your family

• Share with the person next to you.

• Consider sharing with the rest of the group.

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